Follow Your Gut (Part 2): Going Through a Celiac Biopsy

Knowing For Certain

In Part 1 of this 2 part article, my friend Emily wrestled with the decision to have her young daughter undergo an upper GI endoscopy and biopsy to determine if she had celiac disease.  The risks of anesthesia were daunting, but the need for reassurance of  “knowing for sure if we needed to avoid cross contamination or food temptations” prompted Emily and her husband to schedule the procedure.  First,  their little girl, Nicky, had to endure a “gluten challenge” or 8 weeks of eating gluten on a daily basis to ensure that the biopsy results would be accurate.  

Endure?  Endure doughnuts and cookies and pasta? Yes, because Nicky’s primary symptoms of gluten intolerance were painful stomach aches and ADD-like symptoms, and thus, the daily barrage of gluten on her tender tummy soon proved to be almost too much for the little girl to bear.

Gluten Changed Her Daughter's Behavior - A Lot

Prior to the gluten challenge, Nicky’s diet was filled with “lots of fruits and veggies and only minimally processed foods” and almost no gluten in order to keep her difficulties with attention, impulsivity and other symptoms of gluten sensitivity in check. She had always been an excellent student and a well-behaved child, as long as she stayed away from the gluten-monster. Alarm bells began to go off shortly after ingesting gluten on a regular basis.  During the first month of the challenge, Nicky’s teacher expressed her concern.   Nicky’s  behavior had become disruptive in the classroom and she had periods of “explosive rage.” Her mother expounded, “Nicky was not coping…not managing…and having a really hard time letting things go.  She was no longer in control of herself.” 

While the endoscopy and anesthesia loomed in the near future, Emily found it almost unbearable to watch her sweet daughter’s personality change as the flood of gluten invaded her body.  “She would space-out…something like getting dressed in the morning was exceptionally challenging.”   Emily explained how Nicky couldn’t sequence the steps and how she ‘got lost” in the process.  “Twenty minutes later, I’d find her half-dressed and completely off-task and have to redirect her to finish getting on her outfit for school.”

The Day of the Endoscopy

Finally, the day of the endoscopy arrived.  The ease of the entire process was a complete surprise to Emily and so much more informal than she had anticipated.  Because she had chosen pediatric specialists, the complete procedure was family and child-centered.  The pediatric anesthesiologist called Emily the night before (a Sunday!) to introduce himself and see if she or her husband had any questions. The next morning,  Nicky had the procedure done in her “street clothes” and her parents were encouraged to go back to the procedure room with her.  They stayed there till she fell asleep, gave her a kiss and 15 minutes later met her in the recovery area, where she had a Popsicle™.  “I had pictured it in my own mind so differently!  If I had known it was that easy , I would have been less worried. Knowledge is key. ”

The Results Are In

Two weeks later, the biopsy results were revealed with two precious words: no celiac. According to the University of Maryland's Center for Celiac Research, 4 out of 5 distinct markers would necessitate a positive diagnosis (see a list of these markers here).  However, this little one had 3 out of 5.  This was good news.

When I asked Emily what her first thoughts were after hearing those precious two words, she expressed a sigh of relief.  “NOW we know.  Now we know that a little gluten here and there won't have serious, unseen side effects.  We will continue to respect her gluten sensitivity, but, thankfully, being a sensitivity, it allows us a little freedom.  She has chosen in the past to be gluten-free because of her stomach aches, and now we can continue to allow her a little independence in that choice.  But, I continue to be frustrated at some medical professional's dismissal of how significant gluten sensitivity can be for some people.  From what I’ve read online, there seems to be a definite identification of gluten sensitivity.  I guess it just needs more research to be more widely accepted.  I feel like so many people just think I'm crazy when I say how gluten affects her behavior. “ 

I admire my friend Emily.  She listened to her most powerful resource, her mother’s intuition.   She followed her gut and learned what was eating at her sweet daughter’s stomach.  “What’s the best part of once again going gluten-free?” I asked Emily.  “I’m excited for her attention and mood to improve.  I’m excited to watch her heal.”    I smiled: “Be gone gluten-monster!  Be gone!”

About Melanie

Melanie Potock, MA, CCC-SLPMelanie is speech language pathologist who specializes in feeding.  Her work brings her into the homes and schools of her clients, kids, who for various reasons have difficulty with food or with eating. She works with kids and their parents to develop effective strategies that help children become “more adventurous eaters”.  At least 50% of her clients have food allergies or intolerances, and for them, “adventurous eating” takes on a special meaning.  Melanie is also the author of Happy Mealtimes with Happy Kids” and the executive producer of “Dancing in the Kitchen.”

More Posts from Melanie

Why Children with Autism are Often Picky Eaters

Review:  The Magic of the BellyFull Kit (From the Hopeful Company)

The 12 Days of Christmas -- My Favorite Lunchtime Things (Part 1)

Tips to Help Your Food Allergic Child Belong During the Holidays

How to Talk Turkey (and Food Allergies) at Thanksgiving

How Can Parents Feel Less Stress with a Food Allergic Child in School?

Follow Your Gut: What's eating my daughter's stomach? (Part 1)

A Mother's Intuition

Ever heard of “mother’s intuition?”  It is that tiny voice in a mom’s head that says “hmm…something is not quite as it seems.”   That voice was what drove my friend  Emily to forgo her pediatrician’s relaxed approach to her young daughter’s stomach pains and embark on journey directed by her mother’s intuition.   Over coffee  at our local java stop, Emily described the events of the past two years to me.

Emily’s daughter, Nicky, who is now 6, began having constipation and separate periods of stomach pain at age 4.  She  was also having difficulty maintaining attention for age appropriate tasks, causing her  parents to discuss attention deficit disorder with their pediatrician.  While the physician leaned more toward treating the symptoms of the gastrointestinal (GI) issues, Emily asked herself why her daughter was in such agony.  What was causing this?  Because Nicky’s paternal grandmother had a history of stomach ailments and found relief via a gluten-free diet, Nicky’s parents suspected a gluten intolerance.  They took her off gluten in January 2011, and within 2 week the stomach aches and constipation went away.   Interestingly, so did her difficulties with attention and her tendency to be impulsive, which is a hallmark for children with ADD.

Over time, Emily did not worry about cross contamination or the occasional gluten-filled cookie.  Her daughter typically preferred to eat gluten-free foods, eating “lots of fruits and veggies, minimally processed foods” and only rarely,  a food with gluten.   By August 2011, Nicky had returned to daily tummy pains and the discomfort of chronic constipation.   Kindergarten had started, and at first, Emily suspected the culprit to be the stress that such a big transition can cause for a child.  But, by the start of 2012, mother’s intuition was shouting “Do something about this!” 

Time to Act

First stop: allergy testing.  A blood test for celiac, not always foolproof, came back negative.  Additional blood tests and scratch tests for food allergies were negative, but further testing revealed that Nicky had the permissive gene marker for celiac.  Consequently, Emily’s next step was to take Nicky to a pediatric gastroenterologist, who ordered a series of tests to rule out a multitude of causes for Nicky’s pain, including stool testing for parasites, an ultrasound of her liver and pancreas and tests for gastroesophageal reflux disease (GERD).   Again, all tests came back negative, leading Emily and her husband to consider taking one more step: an upper GI endoscopy involving anesthesia and a small bowel biopsy.

“What went through your mind when you considered this next step?” I asked my friend.  Emily gazed into her coffee, taking herself back to that moment.  “The risks of anesthesia.  I had the choice to do it or not to do it and that felt very heavy.  Ultimately, we decided to do it because it was important that we knew  for sure if we needed to avoid cross contamination or food temptations.”   Emily’s anguish over Nicky being 100% gluten free for life was clear.  “Mel, I mourned the loss of gluten.  I truly mourned it.”

Join us for Part 2 of “Follow Your Gut.”

In Part 2 of this article,  Emily is instructed to do a “gluten challenge”,  feeding Nicky plenty of gluten for the next 8 weeks prior to the endoscopy to ensure that the biopsy results would be accurate.   While she mourned the loss of gluten, the flood of gluten over the next 2 months proved to be the most challenging aspect of this journey, as little Nicky’s symptoms became almost unbearable for a mother to watch.

 For more information visit:  How to Get Tested for Celiac Disease.

About Melanie

Melanie Potock, MA, CCC-SLPMelanie is speech language pathologist who specializes in feeding.  Her work brings her into the homes and schools of her clients, kids, who for various reasons have difficulty with food or with eating. She works with kids and their parents to develop effective strategies that help children become “more adventurous eaters”.  At least 50% of her clients have food allergies or intolerances, and for them, “adventurous eating” takes on a special meaning.  Melanie is also the author of Happy Mealtimes with Happy Kids” and the executive producer of “Dancing in the Kitchen.”

More Posts from Melanie

Read PART 2:  Going through a Celiac Biopsy

Why Children with Autism are Often Picky Eaters

Review:  The Magic of the BellyFull Kit (From the Hopeful Company)

How Can Parents Feel Less Stress with a Food Allergic Child in School?

REVIEW: Make Me Over Gluten-Free! (Mineral Fusion Make Up)

 

As seen in Women's Lifestyle Magazine's May, 2012 edition.  Photographs by Daniel E. Johnson of Wealthy Street Photography.

Believe it or not, I'm quite camera shy (really).  In this snap happy world of social media, and with my obligations as a blogger for The Tender Palate and writer for Women’s Lifestyle Magazine, my graciousness in front of the camera leaves a lot to be desired.  It’s rather unsettling to emerge from my somewhat secluded life and “let” perfect strangers document my secrets as they emerge on the map of my face, the turn of my posture, and through the self-conscious gates of my eyes.  Internally, I’m very comfortable with who I am.  But when the vacant lens of modern technology curves ominously toward me, I become the awkward stranger who can’t do anything right.

So for this article, I decided to buck up, accept my insecurities and flaws, and just get over it – right in front of you.  

Thanks to photographer, Daniel Johnson (of Wealthy Street Photography), and makeup artist and Women’s Lifestyle Magazine beauty columnist, Marianne Bockheim, I was able to repair my relationship with that dreaded device called “the camera” and get some tips on how to look better in front of it.   They both helped me feel incredibly comfortable.  Marianne worked her magic on my face with gluten-free makeover using Mineral Fusion ™, “Minerals on a Mission ™” make up.  She also offered some great advice on how to use these wonderful products.    

Mineral Fusion Makeup. Photo by Daniel E. Johnson, Wealthy Street Photography

I Chose Mineral Fusion™ for Three Reasons:

1.    It’s gluten-free status.  

“...all of our products are gluten free. However, no, our facilities are not certified as gluten free. We know our products are gluten free because we perform testing on our finished products. Those results have always resulted in undetectable levels of gluten, which indicates there is no cross-contamination occurring at our facility.  Moreover, our equipment is thoroughly cleaned between product runs, as required by the US FDA.”
~Tim Schaeffer, Mineral Fusion’s SVP of Marketing

Please visit www.mineralfusion.com for specific ingredient and processing information.

2.    Mineral Fusion has a low toxicity rating in the Skin Deep database from the Environmental Working Group (www.ewg.org/skindeep). 

3.    The products work.  They work well and are locally available.

FACE PRIMER & CONCEALER DUO

COLOR:  NEUTRAL

Primer & ConcealeMarianne began with my naked face and applied the Face Primer.  This clear gel creates a smooth canvas for the foundation.  Use the lighter half of the Concealer Duo to cover up any discoloration, and the darker Concealer in the center of under eye puffiness to help “flatten” the puffy curve.  Use a thin application of the Concealer on the eyelid from lash to brow to prepare for the eye color.

PRESSED POWDER FOUNDATION & BLUSH

COLORS:  NEUTRAL 2 FOUNDATION; "TRACE" BLUSH

FoundatioUsing a chubby brush swirl the Pressed Powder Foundation over the entire face.  This evens out your skin, and sets the Concealer.

Then, with a brush, sweep the blush along the cheekbones from ear to apple to define.  Since the apples of most cheeks already contain color, you may not need to apply much blush (or any) to this area.

EYE PENCIL

COLOR:  COAL

Before using the liner, apply the lightest neutral eye shadow from lash to brow.  Apply the liner to the top lid starting from the outside corner of your eye.  Move inward with short, choppy strokes along the lash line.  This makes it easier to control how thick or thin your eyeliner is.  Buff the line with a brush to soften.  Use the same choppy eyeliner strokes (outside to inside) on the bottom lid, too, stopping about 1/3 of the way across the lid.  Using a brush, add a little copper eye shadow over the eyeliner to create a softer, different look.

EYE SHADOW

COLOR TRIOS:  “DIVERSITY” & “ STUNNING”

Marianne used two medium toned eye colors directly on the lid (pink on the inside and copper on the highest point of the lid).  She swirled the darker brown around the outside “V” of the eyelid itself.  With a good brush you don’t need to work too hard at blending.  It just happens.

LENGTHENING MASCARA

COLOR:  GRAPHITE

Take one swipe on top of the lashes (root to tips).  Then place the brush under the lashes, push at the lash base, and then wiggle the brush through the lash tips.  This is a great way to reinforce the eyeliner, or even give you the illusion of eyeliner if you choose not to wear it.

LIPSTICK & GLOSS

COLOR:  GEM

Outline the lips with a lip pencil or with a brush using the lipstick itself.  Then fill in your lips with the lipstick.  We used a little lanolin (my personal trick) to the lips to add a lasting shine.

HOW DID WE LIKE THE MINERAL FUSION?

Review first seen in Women's Lifestyle Magazine, May 2012, p. 30I wore the makeup for several hours after our session (I worked into the wee hours of the night) and it has some serious staying power.  The only thing that smudged subtly was the mascara, and it wiped right off without disturbing the rest of my face.  The colors are beautiful, and I am incredibly happy with how my skin looks and feels while wearing it.  It feels good and natural.  Just the way I like it.

Here’s what the expert had to say:

 “I really love the pigment and blendability of the Mineral Fusions make up.  Traditionally, mineral makeup wasn’t known for holding color.  But advances in technology have helped change that.  Mineral Fusion has a wonderful intensity of color and I love it’s luster.  The colors are really user friendly, it isn’t difficult to figure out how to apply it.  You have a great deal of control.  Even the most challenged of skin can wear this make up well. “  

~Marianne Bockheim, www.intelligentbeautysolutions.com

THE IMPORTANCE OF GLUTEN-FREE MAKEUP

According to a recent study (published in October, 2011), gluten (derived from wheat, barley and other grains) in cosmetics, shampoos and skincare products can pose a threat to people with wheat allergies and celiac disease.  Gluten particles are thought too big to be absorbed through the skin, but people may accidentally ingest small quantities of lotion, lipstick, or other products if they have the product on their hands or use it around their mouth. People with celiac disease and wheat allergies (IgE reactions in particular) can also react to topical application, and ingredients can be hidden.  Vitamin E, for instance is often derived from wheat.  The study cited one woman who started using a new lotion, then developed an itchy, blistering rash on her arms, as well as abdominal bloating and diarrhea - all of which disappeared once she stopped using the lotion.

I was excited to find Mineral Fusion Cosmetics and hope you will be, too!

ABOUT ELISABETH VELTMAN

Pictured with Makeup Artist, Marianne Bockheim (left)Writer, owner of Blue Pearl Strategies, and lover of all culinary delights, Elisabeth is a Tender Foodie. She started The Tender Palate, a website for foodies with food allergies where she consults with experts from every area of the Tender Foodie life. She believes that everyone should live deliciously and have a healthy seat at the table. Find her at www.tenderpalate.com.  (Pictured with Marianne Bockheim)

Interview w/ Dr. Alessio Fasano Part 3: Gluten Sensitivity (a new "food allergy")

Let's Review

THERE ARE 3 FORMS OF GLUTEN-BASED REACTIONS:   Celiac Disease, Gluten Sensitivity, and a Gluten/Wheat Allergy.  There are four different types of wheat allergy -- and each type behaves differently.

In Part 1 of this interview series, I was most privileged to speak with Dr. Fasano about gluten, our bodies’ response(s) to it, wheat allergies, and why so many people today have problems with wheat (plus rye, barley, spelt, triticale, etc.) and gluten-based products.  I learned a surprising fact:  no one can properly digest gluten. Read more...

In Part 2, we discussed testing for celiac disease.  Celiac Disease is a severe auto-immune disease triggered by the gluten protein.  Dr. Fasano and his team put together information on how to get tested for celiac disease.     According to Dr. Fasano the latest research shows that you need to have 4 out of the first 5 of the following markers in order to be diagnosed with Celiac Disease.  Read how to get tested...

Gluten Sensitivity - The New Kid on the Block

In this post, Part 3, Dr. Fasano's team answered questions about what Dr. Fasano calls "the new kid on the block", or... gluten sensitivity.  My thanks to Dr. Fasano and his team at the Center For Celiac Research.

TF: What is gluten sensitivity?

Dr. Fasano: As the word “sensitive” suggests, gluten sensitivity is a reaction to ingesting gluten, which is found in wheat, barley and rye. Symptoms can arise throughout the body and range from fatigue and “foggy mind” to diarrhea, depression and joint pain (see more on symptoms below).


TF: How does gluten sensitivity differ from celiac disease?

Dr. Fasano:  Although symptoms (particularly gastrointestinal) are often similar to those of celiac disease, the overall clinical picture is less severe. Recent research at the University of Maryland Center for Celiac Research shows that gluten sensitivity is a different clinical entity that does not result in the intestinal inflammation that leads to a flattening of the villi of the small intestine that characterizes celiac disease. The development of tissue transglutaminase (tTG) autoantibodies, used to diagnose celiac disease, is not present in gluten sensitivity.

A different immune mechanism, the innate immune response, comes into play in reactions of gluten sensitivity, as opposed to the long-term adaptive immune response that arises in celiac disease. Researchers believe that gluten sensitive reactions do not engender the same long-term damage to the intestine that untreated celiac disease can cause.


TF:  What are the symptoms of gluten sensitivity?

Dr. Fasano:  Just as in celiac disease, gluten sensitivity can affect all body systems and generate a wide variety of symptoms. Gastrointestinal symptoms can include diarrhea, bloating, cramping, abdominal pain and constipation. Behavioral symptoms can include “foggy mind,” depression and ADHD-like behavior. Other symptoms include anemia, joint pain, osteoporosis, and leg numbness.


TF: How many people does gluten sensitivity affect?

Dr. Fasano:  Research from the University of Maryland Center for Celiac Research indicates that it affects approximately 18 million people, or six percent of the population.


TF:  How can I tell if I have gluten sensitivity and what should I do?

Dr. Fasano: This is something to discuss with your family physician or health care provider. If celiac disease and other conditions have been ruled out, i.e., irritable bowel syndrome and other forms of intestinal inflammation, talk to your doctor and dietitian about a gluten-free diet. Please do not undertake the gluten-free diet as treatment without the supervision of health care professionals as nutritional considerations as well as health considerations must be taken into account with this treatment.


TF:  Do I still need to be tested for celiac disease if I think I’m gluten sensitive?

Dr. Fasano:  Yes. You need to be tested for celiac disease to rule out the possibility of long-term complications. Accordingly, do not go on a gluten-free diet until the possibility of celiac disease has been eliminated through testing. If you go on a gluten-free diet and are then tested for celiac disease, the tests could be falsely negative due to the lack of autoantibodies in your blood serum.

Read how to get tested for celiac disease here.


TF:  Is there a test for gluten sensitivity?

Dr. Fasano:  Although researchers at the CFCR are working to develop tests for gluten sensitivity, currently there are no definitive blood tests for the condition.


TF:  Is there a cure for gluten sensitivity?

Dr. Fasano:  Just as in celiac disease, there is no cure for gluten sensitivity. The only treatment currently available is the gluten-free diet.

Other Articles on Gluten-based Reactions

Interview w/ Dr. Alessio Fasano Part 1:  Should Anyone Eat Gluten?

Interview w/ Dr. Alessio Fasano Part 2:  How to Get Tested for Celiac Disease.

About Dr. Fasano & the Center For Celiac Research

Alessio Fasano, M.D., is the director of the University of Maryland Center for Celiac Research, professor of pediatrics, medicine and physiology at the University of Maryland School of Medicine and director of the Mucosal Biology Research Center at the University of Maryland School of Medicine.  Dr. Fasano is an expert on gluten/wheat allergies and celiac disease.  In 2011, he led the research team who discovered a new immune reaction called "gluten sensitivity".

University of Maryland Center for Celiac Research is an institution engaged in clinical care, diagnostic support, education, and clinical and basic science research in Celiac Disease.

The paramount goal of the Center for Celiac Research is to increase the awareness of Celiac Disease in order to provide better care, better quality of life, and more adequate support for the Celiac Disease community.  To view the CFCR's brochure, CLICK HERE.

Interview w/ Dr. Alessio Fasano, Part 2: How to Get Tested for Celiac Disease

 

This post is part of a series on gluten and its various reactions.  In this post I’ve asked Dr. Fasano and his team to break down the markers for Celiac Disease so you can clearly discuss testing with your own doctor.  Many thanks to Dr. Fasano and his team (especially Susie) for helping me put this together.

Background:  No One Can Digest Gluten

During Part 1 of my interview with Alessio Fasano, M.D. of the University of Maryland’s Celiac Research Center, we have learned that no one can properly digest gluten, or more specifically, "gliadin", a protein found in wheat.  This blew me away. 

We simply don’t have it in us -- the enzyme(s), that is.  According to Dr. Fasano, our bodies haven’t yet evolved the ability to process this fairly modern grain called "wheat".  Modern science has also increased the protein content of wheat by 14% in recent years.  In terms of human digestion, that's a big deal.  You see, our bodies need specific enzymes to break down gliadin from its amino acid form (of glutamine and proline) into elements small enough for us to digest.  Humans don’t have these enzymes.  The enzymes that we do have can only break down gliadin into peptides -- elements too large for our small intestines to absorb.  So in an effort to gather nutrients; our small intestines separate to let the peptides through.  As Dr. Fasano put it, “the gliadin cross-talks with our cells, confusing them and causes our small intestines to leak.”

In a “normal” person, the intestinal walls still separate improperly, but the peptide passes through the digestive tract unnoticed by their immune system.  When someone has a reaction (such as gluten sensitivity or an allergy), that person’s immune system recognizes the larger peptide as an enemy (its not supposed to be there) and rushes to protect.  If that person has celiac disease, the immune system gets so confused that it turns on the intestinal walls themselves, damaging them.  The gluten is the "trigger" for this autoimmune disease.   And celiac disease is the only auto-immune disease with a clear trigger. 

The only treatment of celiac disease, or any immune reaction to gluten, is to completely remove all wheat (and also similar protein-containing rye, barley, spelt and triticale) from your diet.  Some people also need to remove oats.

THERE ARE 3 FORMS OF GLUTEN-BASED REACTIONS:   Celiac Disease, Gluten Sensitivity, and a Gluten/Wheat Allergy.  There are four different types of wheat allergy -- and each type behaves differently.

Note:  Gluten Sensitivity has many of the same symptoms.  In Part 3 we will address some frequently asked questions about Gluten Sensitivity.

In this post I’ve asked Dr. Fasano and his team to break down the markers for Celiac Disease so you can clearly discuss testing with your own doctor.  

Markers for Celiac Disease Testing

Biopsy showing normal intestinal villi, or "Stage 0". (Used with permission of The Center for Celiac Research) According to Dr. Fasano in our interview, the latest research shows that you could have 4 out of the first 5 of the following markers in order to be diagnosed with Celiac Disease.  If your doctor finds that you have 4 markers before your biopsy, you may be able to avoid doing the biopsy, however, the biopsy is the gold diagnostic standard* (this is no longer considered to be true, please see 2014 update below).

*UPDATE: In my 2014 interview with Dr. Fasano, he updates this information and says that the biopsy is no longer the gold standard for celiac diagnosis. It is an important marker, but only after the other 4 out of 5 markers warrant it.

Read the 2014 interview & the updated information here.

Marker #1:  Symptoms 

Symptoms of celiac disease include diarrhea, constipation, weight loss, abdominal pain, chronic fatigue, weakness, malnutrition, and other gastrointestinal problems. In children, the symptoms may include failure to thrive (an inability to grow and put on weight), irritability, an inability to concentrate, diarrhea and bloating. Further, people affected by celiac disease may experience extra-intestinal symptoms that involve many systems and organs including bones (osteoporosis, arthritis, and joint pain), blood (anemia and bleeding), reproductive system (infertility and reoccurring abortion), nervous system (chronic fatigue syndrome, depression, dementia), and behavioral changes.

 Note:  Another manifestation of celiac disease is a skin rash called "Dermatitis Herpetiformis" (DH).  A skin biopsy is typically taken to determine if you have this manifestation.

Marker #2:  A positive blood test

Biopsy Showing Stage 1: Infiltrative Damage to the mucosal lining of the small intestine. (Used with permission of The Center for Celiac Research)There is a particular series of blood tests called the ‘Celiac Panel'". These tests measure your immune system’s response to gluten in the food you eat.

•  tTG-IgA or tissue transglutaminase-IgA
• AGA-IgG or Antigliadin IgG
• AGA-IgA or Antigliadin IGA
• Total IGA

The presence of tTG antibodies is highly suggestive of Celiac Disease, while AGA can be elevated also in cases of wheat allergy.

Marker #3:  Genetic Compatibility 

Biopsy Showing Stage 2: Hyperplastic - the villi are shrinking and flattening. (Used with permission of The Center for Celiac Research)As an autoimmune disease, Celiac Disease is the consequence of the interplay between genes and the environment (gluten). We don’t know all the necessary genes to develop Celiac Disease; however, HLA DQ2 and/or DQ8 are absolutely necessary to develop the disease. Since one-third of the general population also has these genes, the presence of DQ2 or DQ8 does not imply that the person will develop Celiac Disease, rather, that they have a genetic compatibility with Celiac Disease. Conversely, the absence of DQ2/DQ8 almost certainly rules out Celiac Disease.

Marker #4:  An Intestinal Biopsy

Intestinal biopsy showing Stage 3a, or partial atrophy of the lining of the small intestine. (Photo used with permission from The Center for Celiac Research)A biopsy is really the gold standard for diagnosing Celiac Disease. 

NOTE: In my 2014 interview with Dr. Fasano, he says that the biopsy is no longer the gold standard for celiac diagnosis. It is an important marker, but only after the other 4 out of 5 markers warrant it.

Read the 2014 interview & the updated information here.

If blood tests and symptoms suggest celiac disease, a biopsy of the small intestine is usually taken to confirm that diagnosis. During the biopsy, the doctor removes tiny tissue samples from the small intestine to check for damage to the intestinal villi. To grab the sample, a doctor threads a long, thin tube called an endoscope through the patient's mouth and stomach, then into the small intestine. Using the endoscope as a tunnel, the doctor passes instruments into the small intestine in order to retrieve the sample.

A Marsh Score is used to determine how far the celiac disease has advanced.  Scoring starts at "0" and ends at "4".  If the mucosa (intestinal lining) is normal, celiac disease is unlikely, or "Stage 0".  This is also known as the "pre-infiltrative stage."  Stage 4 indicates a total flattening (or atrophy) of the villi in the small intestine.  The villi allow nutrients from food to be absorbed by the small intestine.  Without healthy villi, we become mal-nourished, even if we eat like a horse.

Marker #5: The symptoms resolve (go away) with a gluten-free diet.

Biopsy showing Stage 3b - subtotal atrophy of the small intestine where the villi are shrinking and flattening (Photo used wtih permission of the Center for Celiac Research)A gluten-free diet is more than simply taking bread out of your meals.  Gluten can be "hidden" within ingredients like smoke flavoring or barley malt (among many others).  Gluten also is in many cosmetics and beauty products.   In addition, certain products that do not inherently contain gluten can be processed with wheat, such as other flours or nuts; and as a result, processed foods can have a great deal of cross contamination. 

NOTE:  A stool sample test, which can recognize positive antibodies, is also available.  But at this point stool samples are not considered as a reliable diagnostic tool by the medical community. 

See: The Most Surprising Places for Hidden Gluten

Long-term Health Consequences & Treatment

Celiac disease can be life threatening.  If you don't entirely remove gluten from your diet, celiac Stage 4: Biopsy showing total atrophy of the mucosal lining. The intestinal villi are completely flattened. (Used with permission from the Center for Celiac Research)disease can have long term and serious health consequences.  I stress this, because I’ve heard those newly diagnosed ask, “How much gluten can I eat?”  Then some bad advice in return, “Well, it depends upon how bad your celiac disease is.”  There may be degrees of damage caused by the illlness, but there is no corresponding degree of treatment.  The only treatment for celiac disease is a completely gluten-free diet. 

Celiacs are more likely to be afflicted with problems relating to malabsorption, including osteoporosis, tooth enamel defects, central and peripheral nervous system disease, pancreatic disease, internal hemorrhaging, organ disorders (gall bladder, liver, and spleen), and gynecological disorders. Untreated celiac disease has also been linked an increased risk of certain types of cancer, especially intestinal lymphoma   _Center for Celiac Research

Creative Healing

The good news is, that if you do remove gluten from your diet, and your diagnosis is celiac disease, your health can and probably will improve.  Your intestines can return to normal, and your risk for other diseases greatly reduced.

The villi are not permanently damaged. The intestine is an organ, which renews itself every three days. Therefore, if the damage is exclusively due to CD, the villi will be reformed once on a gluten-free diet. The time for the villa to return to normal varies among individuals.   _Center for Celiac Research

 To heal, tap into your creative juices and approach eating with a different mindset.  Your life now includes minimally processed whole foods and constant label reading.  You will need to carefully choose restaurants and speak up to your friends, family and hosts, whomever they may be.  Don't eat anything unless you know exactly what it contains.  If you are recently diagnosed, become an information junkie about your disease and learn, learn, learn.  The Tender Palate (The Tender Foodie), The Center for Celiac Research and other great resources are here to help.  With some changes, a healthy, satisfying life is just around the corner.

Other Articles on Gluten-based Reactions

PART ONE:  Interview w/ Dr. Alessio Fasano:  Should Anyone Eat Gluten?

PART THREE:  Gluten Sensitivity - A New Food Allergy

For More information, The University of Maryland Center for Celiac Research has a wealth of videos, articles and FAQs to help guide you.

About Dr. Fasano & the Center For Celiac Research

Alessio Fasano, M.D., is the director of the University of Maryland Center for Celiac Research, professor of pediatrics, medicine and physiology at the University of Maryland School of Medicine and director of the Mucosal Biology Research Center at the University of Maryland School of Medicine.  Dr. Fasano is an expert on gluten/wheat allergies and celiac disease.  In 2011, he led the research team who discovered a new immune reaction called "gluten sensitivity".

University of Maryland Center for Celiac Research is an institution engaged in clinical care, diagnostic support, education, and clinical and basic science research in Celiac Disease.

The paramount goal of the Center for Celiac Research is to increase the awareness of Celiac Disease in order to provide better care, better quality of life, and more adequate support for the Celiac Disease community.  To view the CFCR's brochure, CLICK HERE.